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trixie1313 (@trixie1313)

Neuroendocrine breast cancer

Breast Cancer | Last Active: Mar 20, 2019 | Replies (8)

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@hopeful33250

Hello @trixie1313

Yes, I agree that breast NETs (as well as gynecological NETs) are rare. While I have had surgeries for three NETs they have been much more typical and located in the digestive tract.

I would certainly encourage you to consult with a NET specialist. Unfortunately, NET specialists are not located in every state. However, even if you have to travel for an initial consult it would probably be very helpful for you. Mayo has some great specialists. Here is a list from the Carcinoid Foundation website for others across the country and also world-wide. https://www.carcinoid.org/for-patients/treatment/find-a-doctor/

Will you post again and let me know how you are doing in treating this type of NET?

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Replies to "Hello @trixie1313 Yes, I agree that breast NETs (as well as gynecological NETs) are rare. While..."

Thank you for that information. I did go also go for a a second opinion at TheSecondOpinion.org in San Francisco which is made up of specialists from Kaiser, Stanford, UCSF, and PMC. The oncologist at my tumor board was from UCSF and the pathologist that confirmed the diagnosis was from Stanford. My next step right now is to have my PET CT scan and then I'll know more. Shall post further following that…hoping that is clear. My CT body scan was, but the oncologist explained that the PET scan is more sensitive than CT. Fingers and toes crossed!

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